Wednesday, October 8, 2014

Blame It On The Lupus: Hair Loss

Hair loss.

Just those two words by themselves do not have any positive connotations.

Hair loss.

A symptom of lupus.

Hair loss.

Something I experienced when I was first diagnosed with lupus in 2010.

Hair loss. 

One of the most traumatizing experiences I have ever gone through.

Hair loss.

An ever more reminder that I have lupus and an even bigger reminder that my lupus is active.

This was my hair May 2010, two months before I was diagnosed with lupus. My hair was thick. It was crazy thick. Whenever I got my hair done, my stylists would tell me, "you have such thick hair." Drying my hair took forever because there was just so much of it.

July 2010 was when I was diagnosed with lupus. As you would imagine, my life changed. My body changed. My emotional well-being changed.

One of the most prized possessions of women is hair. Some may call it vain, but it is what it is.

Hair is many things to different women. Hair is feminine. Hair is beauty. Hair is sex appeal. Hair is an avenue for self-expression.

I lost all of that when most of my hair fell out progressively (but rapidly) after my diagnosis. It fell out in clumps in the shower. It fell out in bunches when I wasn't in the shower. Imagine my head of hair in the picture above diminished so much that you could see my scalp in multiple sections. I had bald spots.

As a female, a 24 year old female (at the time) who felt like I was on top of the world, in my prime, hair loss was one of the most traumatic experiences to crush my world.

I tried to wear headbands to disguise some visible scalp areas. I sat in the back of class so no one could stare at my head. I cut my hair short and short as they said short hair conceals thinning hair. I rarely left my home. If I did, it was to go to school, to my internship and to the home of my boyfriend  at the time.

I cried every day, every single day.

I tried to keep a happy face for everyone, especially my mom who took my diagnosis worse than I did. I broke down this one day that I remember it so clearly. It brings tears to my eyes 4 years later. I was watching TV on the living room couch. My mom came behind me and said, "your hair. We can go buy a wig. Let's go buy a wig." And then she started crying. With a brave face, I said "no. It's okay." She insisted, I refused. She left and I ran to my room bawling.

On another occasion, I remember my brother was brushing his teeth. I was combing my hair. And I turned around so he can see the back of my head. I asked, "can you see my bald spots?" He took a gulp and with a crack in his voice he said  "yes." My brother and I don't "talk" about serious stuff. But he knew. He knew how much it hurt. He hurt with me. He hurt just to tell me.

I don't have too many pictures of myself from 2010 - 2012 just because I avoided them. I felt so ugly. I had the steroids "moon face" due to meds. My hair was falling out. I was a not cute hot mess. I felt like (excuse my French) shit. 

Spring 2012 was when my hair started to grow back. I was taking a biotin supplement which I think helped speed up the process. I've tried shampoos and this spray that did not work. For nearly 2.5 years, I kept my hair short to conceal. By spring 2013, my hair was thicker and growing faster. Most, but not all, of my hair grew back. I was happy with it. 

By 2014, I felt beautiful again. 

This is me in May 2014. This was the first time I felt genuinely pretty in years. 

Fast forward to September 2014. I notice my hair falling out more and more. I know it is normal for hair to fall out daily. What was falling and how rapid was not normal. 

Mini clumps were falling out in the shower. I constantly felt tickles on my arm due to loose hairs falling onto them. 

I woke up one day with many hair strands on my pillow (it wasn't as traumatic as in 2010, but still very much so). I got my hair cut right above my breasts within 2 hours of waking up. 

It's happening again I thought to myself.

I cried. I panicked. My hairdresser noticed my  random small bald spots. I told her to comb lightly. And she did. Mini clumps of hair would drag out with the comb.

She saw my face. "You'll be okay," she said. "If you got through it before, I don't see why you can't get through it again."

These are mini claw clips. I used to need 4 to keep my hair up in a secure bun.

Now, I only need 1 or 2 if my hair is feeling very poofy. It's a sad reality. It makes me sad when I tie my hair up to see gaps at the side of my head. It's so weird that my hair dries a gazillion times faster because it's a lot thinner. It's so weird that I when I hold my hair, I notice a grave difference in what it was months ago and even years ago.

My most dreaded moments of the week: washing my hair in the shower and seeing the hair at the drain. 

I know it's not the end of the world if my hair falls out. But it opens up a whole new can of worms: of flashbacks, insecurities, worrying about my health. 

In all honesty, hair falling out now freaks me out. I'm getting older. Hair doesn't always grow back as you get older. Hair falls out. Two odds against me. Granted, I'm in late 20s, still young, but still getting older. 

I'm not really sure how to end this blog post.

I really feel like I just spit out a whole bunch of words.

If you made it this far, thank you for reading...and you're a trooper :)



  1. Your hair is beautiful :D


  2. Loving the hair it's so healthy and shiny!!! would love it if you could follow my blog and leave a comment beaut!

  3. Dealing with hair loss is such a personal matter that needs to be shared more often. I know venting about my own hair loss help me deal with it in the past. I understand how you feel about your hair loss, and a lot of people can say it just hair, but when you losing it yourself, it is an entire different matter.
    It then becomes that it is not just hair, especially when it is falling out, and not growing back normally. Prayers going out to you and hope it doesn't get bad. Xoxo Kreyola.

    1. i couldn't have said it any better! thank you for your kind words and support :) xoxox

  4. Oh you poor thing, that would feel horrible :( I hope it gets better for you soon xx

    Thrive on Novelty

  5. I always thought you had the most gorgeous effortless curled hair :) your hairdresser is right. you got through this and you'll get through it again! positivity!!

    1. oooh there was a lot of effort put into those curls! hehe. and thank you :) positive thoughts, positive thoughts :)

  6. You can really write an interesting post. Wow I feel for you. Your hair still look nice and you seem to be a strong person and things will get better and continue to hold your head up.